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gracefullyteaching

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Hello,
Are there any members on here who have been diagnosed with respiratory onset ALS whom I may communicate with?
Thank you,
GT
 
When you say "respiratory onset", do you mean those whose initial symptoms were respiratory rather than in the limbs or the bulbar region? Or are you willing to speak with those of us whose initial onset was elsewhere, but the disease has progressed into the respiratory area? Pure respiratory onset cases are rare to start with and the life expectancy without artificial ventilation can be very short, so you may have a difficulty finding a pure respiratory onset case.
 
My husband's initial complaint to his internist had been that he was fatigued and losing strength. He had stopped taking his daily walks because he was short of breath. At that time his doctor noticed that his diaphragm and upper arms were losing muscle. He sent him to a local neuro, who subsequently referred him to an ALS Clinic.

In the intervening 3 month period between the internist exam and the first EMG, my husband also consulted a pulmonologist, who thought he was borderline asthmatic. The doctor referred him to a sleep clinic and they found that he had severe sleep apnea. He was then prescribed a bi-pap, a month or two before the ALS diagnosis. Both ALS specialists (5 months apart) who examined him noted that he was using his neck muscles to breathe.

I understand that respiratory onset is very unusual. At this point, my husband uses the bi-pap with humidifier for sleeping and the Trilogy for daytime requirements. He spends time on one or the other about 75% of the time now. He has no problem swallowing or talking. Walking is becoming a problem because he has no upper body strength to keep him erect, and fatigue occurs quickly.

The final confirming ALS diagnosis occurred in March 2010. I'll be glad to answer any questions you may have.
 
One of my earlier symptoms was that I was short of breath. It wasn't known as respiratory onset, because I did have left side weakness first...and respiratory came a couple months later. Is there anything I can help you with?
 
pbush & kmendsley,
My specific question regarding the respiratory symptom would be about the shortness of breath accompanied by pain/soreness in the ribcage area. The reason I ask is that one of my earliest symptoms was shortness of breath, but has always been with the soreness of the muscles around the ribcage area. This has been for 10 months. When I breath it feels like the left side of my diaprhagm does not work, therefore I use the upper chest muscles to breathe. Everything started on the left side first but now has started to spread. I am not looking for anyone to diagnose, but more wondering about the pain/soreness about the ribcage area (back muscles too in the last 2 months). Thanks for your time!
GT
 
Mom had bulbar onset. It was difficult for her to take a breath before it was impossible for her to walk. But the pain in the rib cage doesn't sound like an als symptom. Have you been to your dr recently? X-rays? Pneumonia? Broken rib?
 
At this point, my husband uses the bi-pap with humidifier for sleeping and the Trilogy for daytime requirements. He spends time on one or the other about 75% of the time now.

What is a Trilogy? Is that the brand of a bi-pap machine or something else?

Thanks!
 
At one point back in January (my husband was diagnosed in November), Bob had, for a few days, intercostal pain (the region between the ribs) and pain in the muscles in his back. He ended up trying to take shallow breaths to avoid the pain that was associated with breathing. It turned out after a few days that he had a mild case of pneumonia and was in the hospital for 3 days - they couldn't tell whether it was aspiration or bacterial pneumonia. He had a bit of a fever during those first days. It's probably not the same but maybe you have some type of chest infection?
 
Thanks for the input... I have had a chest x-ray, 2 EchoCardiograms, EKGs, etc. No sign of fever or even congestion. There seems to be no explanation for the pain/soreness in the rib/chest area. It's been there for 10 months (at varying severities). GT
 
@gracefullyteaching, I also had pain in the ribcage area- though like a previous person stated in the thread this is not connected with ALS. For a while, dr. thought late onset of asthma. Then dr. though pulmonary embolism- which wasn't it either. Next, thought that maybe it was costochondritis. This is when the muscles in the ribcage get sore and tight - this can be from as simple as coughing too hard and straining them to the point of lifting something too heavy, or exercising arms too much to cause inflamation in that area. Horrible pain, but not really a urgent health issue as long as you figure out what sets it off. (I have this on and off since I was a kid). Lastly, they considered heart angina..which consequently I also have because my heart beats over 100 beats per min. while at rest...which doesn't relate either to ALS.

So as you can see, there are multiple cause to ribcage/chest pain. I would recommend to go to general doctor and ask for a breathing test- you go in and your capacity breath is measured. I can't remember the name right now, sorry. And secondly, have the dr. check out the heart. I see you have had an echocardio...but I would recommend a halter test. This is when you are hooked up with electrodes for a 24 hr. time period and it monitors your heart rate through the whole day and activities. Then you log when you have pain, and they can check those specific times, and any other times you may have symptoms for problems. This how I was diagnosed with tachacardyia (fast heart rate and the pain with it gave me diagnosis of angina).

Good luck to you. Try not to jump to any conclusions till you get some of these other tests done. Your dr. should have no trouble ordering them if you 1. Have problems/pain while breathing and 2. Have pain throughout the day in chest area.-haltar is inexpensive way for them to check things out :)
 
campdiva - the Trilogy from Philips Respironics is a self-contained vent. It can be used as a bipap but is more often used as a sip-and-puff ventilator during the day and even on outings. It has a 6 hour battery pack so it is very portable.

Tom
 
pbush & kmendsley,
My specific question regarding the respiratory symptom would be about the shortness of breath accompanied by pain/soreness in the ribcage area. The reason I ask is that one of my earliest symptoms was shortness of breath, but has always been with the soreness of the muscles around the ribcage area. This has been for 10 months. When I breath it feels like the left side of my diaprhagm does not work, therefore I use the upper chest muscles to breathe. Everything started on the left side first but now has started to spread. I am not looking for anyone to diagnose, but more wondering about the pain/soreness about the ribcage area (back muscles too in the last 2 months). Thanks for your time!
GT

Do you have this pain all the time or does it occur at certain times of the day or with certain activities? Once it starts for the day, does it continue for the rest of the day? Have you found anything that will relieve it -- a change in body posture, doing breathing exercises or therapy, etc.?
 
marywest45 was, I believe, diagnosed with thoracic onset of ALS, and also Erica, but the classification was changed to bulbar onset (maybe) for her. Both of these members are very nice, and I'm sure would be more than happy to hear from you. As the thoracic region is the area the diaphragm and intercostal muscles are located, I think this is what would be considered respiratory onset.

Several of us (me included) had breathing issues from the onset, or nearly the onset, but still would not be considered to be in this classification.

When you say you feel like the left side of your diaphragm does not work, what do your doctors say about this? Have you told them? I ask, because I noticed when I read through my pulmonologist's notes from my last appointment, that he had written I did not use accessory muscles to breath (using accessory muscles would not be a good thing by the way). My point being that our doctors observe a lot more during our appointments with them than they may indicate while with us.

Good luck to you, I hope you get some answers SOON!
 
trfogey- I have this pain/soreness most of the time. I do not notice it when I am sitting still or sleeping. It is most noticeable when moving around. The most uncomfortable position for me is sitting upright, breathing wise, such as driving. It's that left side of the diaphragm which feels like it isn't working.

Rose- When I explained this to the last 2 neurologists, both said they didn't know what it was, or if it would go away. One neuro told me I looked to healthy to have anything wrong. I plan to make this 1st on my agenda with the neuromuscular doc at the end of the month. You are right, good drs will notice things during appts.

It's nice to have others listen and respond. Thanks so much for your time. It's hard for me to talk about all of this with my family/husband. I think they can only handle so much.
GT
 
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